August 20, 2013 by kruckr
Today was the first day of school for Duval County. While my teacher friends and students began the 2013-14 year, Henry and I had another visit with the cardiologist. Dr. Moon is still happy with his weight gain and growth (9lbs. 3 oz and 22 in. long today), but is still concerned with his breathing. His respirations are generally shallow and fast. Following his routine echo at UF, Dr. Moon sent us across to Wolfon’s Children’s Hospital for a chest x-ray to see if there was any extra moisture in his lungs making them heavier than they should be. Apparently there was (due to the extra blood circulating to the lungs because of the VSD/Tetralogy of Fallot). So, Henry will start his first prescription this week … Lasix. It’s a diuretic that will help pull moisture out of his lungs, therefore making them less stiff and heavy and will hopefully make it easier to breathe. If the drug works, then Dr. Moon may consider moving up his surgery since the heart defect is interfering with his breathing.
As of now, we’re planning his first cleft lip surgery to be around the end of September/beginning of October and his heart surgery to be sometime in November or December. As we’ve already met our out of pocket max for insurance this year, we’re kind of happy that we’ll be able to get them both done before the end of the year … at least from a financial standpoint.
While he’ll need several cleft surgeries over the course of his life, Henry should only need one heart surgery. We’ll be looking at anywhere from one to two weeks in the PICU/step down recovery following the surgery. And of course, there will be several follow up appointments in the weeks following. This will almost certainly cancel any plans we had to travel during the holidays. Hey family! Florida is nice in December!
We have several more appointments in the next few weeks. This week we’ll be seeing speech and physical therapy. I’m looking forward to these to see how Henry is progressing along the milestone chart and to learn some exercises we can do with him at home. The following week, we should be seeing the ENT (who is part of the cleft team). Sept. 3 is mass appointment day. We start with the cardiologist, followed by the pediatrician (boo for two month vaccines), and after that we’ll see the geneticist, Dr. Persyck. Dr. Persyck is generally an amazing person and I have lots of questions for him about 1p36. I’ve somewhat educated myself on genetic testing in the past few weeks and apparently they can actually tell which sections of the 36 band were deleted from the chromosome. Since these sections contain specific genetic information, I’m theorizing that knowing what information is missing, will give us an idea of what sort of delays and challenges Henry may face as he gets older.
Along with the appointments, Henry and I are going to do a day care trial run one day. I’m really not looking forward to a morning routine that involves getting up at 5:30 a.m. Needless to say, this trial is pretty important to prove to myself that it can in fact be done. I have finished my sub plans for the duration of my leave. Technically there isn’t anything else I HAVE to do for work, but I, the ever-stubborn and impatient, am starting to feel the itch. Especially since apparently I have to re-learn how to do my job (lots of changes in my district this year). But, I must repeat then mantra … Henry, Henry, Henry! I know that I will never get this time back and there are no accolades or acknowledgements worth giving up these moments with him. I really do love my job, but I’m feeling a fair amount of envy for stay at home moms right now.
Hold your babes close tonight. Time goes by way too fast.
Recent pics …
Henry getting a kiss from cousins Lexi and Lily. His grandpa paid them in pastries to delivery a kiss from Minnesota:)
This is Henry’s last time wearing my favorite newborn-sized sleeper. He’s growing so fast!
He is Soooo Cute! It does go by SO fast!! Oh and I LOVE Dr. Persyck!! I agree, He is fabulous!
Rebecca and Dan, You are such wonderful parents for Henry. You are blessed by your sweet boy as well as a blessing of love for him. We will continue to pray for you all. “Love is patient and kind…love never ends” (1 Corinthians 13)
I really can’t wait to hold him and hug you! Is October 17-19 ok for us to visit or should we wait due to surgery and all.